Autism: A New Perspective
Autism: A New Perspective
When Parents Experience Crisis
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Crisis and Re-Crisis in Autism Parents

When parents first hear their child’s diagnosis of autism, they often go straight into a state of crisis. We see it all the time and often the first thing we do is work with families to help them get over this initial state of crisis, to accept, and to move forward and focus on their child’s growth and wellbeing. But many parents actually go back into a state of “re-crisis” later on in their journey.

In this episode of “Autism: A New Perspective,” Dr. Sheely talks about the things that might trigger a state of crisis again for some parents, how to know if you’re in a crisis state, and what you can do to move yourself out of it.

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Kat Lee: Welcome back to Autism: A New Perspective. The podcast show where we help you understand the mind of your child. And we always encourage you that growth for your child is possible. I’m Kat Lee, and in this week’s podcast, Dr. Sheely talks about a very important topic for parents: Parents in the crisis state. What does it mean to be in crisis? How do you know? Let’s listen in. So, Dr. Sheely, I wanna talk about a topic that I just feel so passionately about, which is crisis, and then the potential for recrisis. In our program, when we have new families come in, one of the things I love about it is we help parents know what crisis is, which I think is something we should visit about, but I don’t always think parents, as they’re going through life with their children, may realize they’re in what I call a recrisis. So… And so, I’d love to, first, just talk to you about recognizing you’re in a crisis state and what that looks like.

Dr. Rachelle Sheely: It’s an important question, because when we think of crisis, we assume that we… Often, we assume that we’re not in crisis. “I feel okay, I’m functioning, I’m going to the job. Fixing dinner for my family, haven’t screamed at my husband for two hours.” You know, you feel like we’re not in crisis, but some of the indicators of crisis don’t have to do with everything that’s on the surface. It’s how we start approaching our lives. For example, “I heard that it really will help my child if we swim with the dolphins. I need to go swim with the dolphins.” “I’ve heard that it will help my child if I take pottery lessons. I need to do pottery lessons.” And so, what we find ourselves doing is we find ourselves becoming very fragmented. And as we become fragmented, we lose our focus on what we need to be focusing on. We become procurers of services rather than guiders or involved in the guiding relationship for our children. And so, if we keep that in mind and we find ourselves going in a lot of different directions… Can almost say “I wonder why I’m in crisis again.”

Kat Lee: I think it can be really hard, as you touched on, to recognize that’s what’s going on and recognize the feelings. Like you said, it’s a… It feels like a functional crisis, but really, it’s worse than being on a hamster wheel, I think. It’s going nowhere fast.

Dr. Rachelle Sheely: It’s going nowhere fast. And I think the confusing thing about it is that because we deal with the crisis when people first come into RDI, we assume we’ve dealt with the crisis. But it doesn’t mean that things won’t trigger that crisis again. Trigger may be that initial response we had when we were traumatized to hear that our children had something like autism. And so, that can come back. One of the ways that… One of the times that I see it come back is when parents go some place and they see the same… They see children the same age as their children, and developmentally, they’re at different places, and it hits them. “I’ve been so pleased because we’re moving along and we’re doing so well, but my child’s not doing that.” I had a mother tell me one time that it hit her when she was in the waiting room at the doctor’s office. There was a little girl sitting next to her with her mother, and she was doing things that her son the same age wasn’t doing, so it just hit her. All of a sudden, she was in crisis again. So, there are these things that we don’t really think about, and if we’re not aware of what’s going on, we don’t realize what that means to us. And I think there are ways to think about it, but having said that, we’re not always thinking about how we think about things in the moment.

Kat Lee: Well, and generally, you don’t go “I saw that, and now I’m in crisis.” It’s like, it takes time to process in your brain that you’ve been impacted. And I think… When I think about parents that I’ve talked to, it’s like… A parent would see this, they feel a sense of some kind of a physical wounding. And I say physical, because when you… When that hits you, it almost feels physical, and then that crisis comes on top of it, like it just is almost a spiral for the parents. And they don’t really know that’s what’s happening to them.

Dr. Rachelle Sheely: Yeah, and so they start thinking in a certain way. “Oh, I need to address this. I need to… I need to do something about this.” And that leads them down some of these bunny trails. I mean, we all go down these bunny trails. I don’t think this is just specific to autism. I think we all have a tendency to do that. But we start going down bunny trails, and we lose the focus for what we need to be focused on.

Kat Lee: I think what you said about this doesn’t have to do only with autism. It’s so important that crisis is a state we go into. I think of many of my friends who have vulnerable children for many, many different reasons, and… And they… They experience that crisis, and the recrisis sometimes. If you have a child who, put under any physical effort, has asthma, severe asthma, is on… Living a fearful crisis, like… You know, “What happens if they don’t have their inhaler, or what happens… ” So I think why that’s important is to understand that that is something that happens to human parents; it happens. It’s not… There’s nothing wrong with you if that happens, in the sense of it’s what occurs in us as human parents.

Dr. Rachelle Sheely: It does, and we wanna fix it. I mean, as parents, we wanna see what’s best for our children. We want our children to wake up in the morning and say “I’m gonna go to school,” not “I hate school, don’t make me go.” And… But I think there is an overlay for a parent who has received that diagnosis of autism. And I think that overlay sometimes is that what you would be experiencing as any parent of any child now becomes an autism parent experience. And so, “Oh, I’m dealing with autism.” No, you’re dealing with a sassy child. [laughter] You’re dealing with someone who wants… Who wants ice cream for breakfast, and you don’t wanna give him ice cream, and it’s things that we all deal with. If you’ve… Once you’ve received that diagnosis, I think there is a chance… I wouldn’t say it’s a 90% chance. I think there’s a chance that you will go back and look at that through the wrong lens. And if we can keep focused on the guide… Two things, on the guiding relationship, and if we can keep focused on “Where do we want our child to be at age 21?”, I feel like we can feel like it’s an inoculation against going down those bunny trails that get us off course to the point that we lose what we need to be focused on.

Kat Lee: This is a tricky subject, what I’m about to ask. But how… How much does… I kinda have a way of talking about the world, which is a big place. How much do others affect our state of crisis? Because I know, sometimes, I have parents who report these feelings, just because others have such a high… A high expectation… Such an expectation, like your child will do this by this age, and this by this age, and this… And that just… Just that knowledge, or those little comments like “Well, when will your child do this?” can send them into crisis sometimes, so how much are they just impacted by others? 

Dr. Rachelle Sheely: By others, and maybe by a book they’ve read, or something they’ve seen on TV. And that idea, that my child… I’m so excited. We just tested my child, and he’s… He’s only in second grade, and he’s reading at a fourth grade level. You hear these things from other parents, and you’re thinking, “How far behind am I? What’s going wrong here? When is my child gonna read at a fourth grade level?” My child reads at a fourth grade level, but the comprehension isn’t what it’s supposed to be. So all of these… All of these things that we’re bombarded with… I mean, I think, even of things like advertising. “If you buy this game, your child will become the next Albert Einstein.” You know. And you buy this thing, you tie things on your child’s wrist, and you start prepping your child, who knows? But you do these things, because not only are we in families where grandparents have expectations, and not only are we in neighborhoods where we can compare ourselves. The marketing network of media bombards us all the time with “If you were a good parent, you would get this for your child, because then your child would be the next Einstein.”

Kat Lee: I can remember… I can remember… This has happened more than once. When I say it, it sounds kind of bad, but I like to be real, as you know. I can remember people coming up to me and saying “So, have you discovered your son’s special gift?” And it was just like… It was really… They were being sincerely like “Oh, I bet… You know, I’ve heard and read he is… ” ‘Cause I’m gonna have sometime… And I actually had one… Again, well-meaning, and I love the way you and Dr. Gutstein talk about that friend say to his spouse, “They need to work harder on finding out what the special gift is.” And those are very hard things for parents that can’t express in so many levels. They probably don’t have to express that, where well-meaning people are saying things that are very wounding and untrue, on top of which. But they can send parents into a crisis state. If I have one message, I would say be careful what you say, because a well-meaning… God, it reminds me of what Dr. Gutstein has said, where people will say “Oh well, you know, if they’re not doing this by this age, that’s it,” that also sends us into crisis, Dr. Sheely. 

Dr. Rachelle Sheely: Yeah. And I feel like the other side of that that I just wanna respond to is that, I don’t think people say things like that to be mean, and I don’t think they say it maybe even for the wrong reasons. I feel like they don’t know what to say. So they think they’re saying something that can be supportive, and yet, that goes right to a parent’s heart. And… You don’t know what to say. I mean, you feel like you can’t be honest with them and say “You know, I wish you would go away,” or “I wish you would stop talking to me,” or “Why would you say something to me like that?” I mean, we’re… We’re kinda trained not to be that direct. But it’s hard to respond. Maybe… I’m not so sure it’s hard to respond. We know how to respond, but it’s not a truthful response.

Dr. Rachelle Sheely: And two, we don’t know how to respond with a truthful response that would actually maybe help those people to see “You shouldn’t be saying these things. That is not a helpful thing to say.” And for a dad to say “She needs to work harder to find a special gift,” it’s like, “Who are you to judge? Who are you to… Who do you… Who are you to give an opinion on that?” And that whole… That whole area of conversation that I’ve heard more times… If I’d heard it once, it would be more than I wanna hear it, but I’ve heard it more times than I ever wanna hear it. I think it just goes to our hearts because it says “You are different. Your child is different. And I can probably tell you what to do. I can… I can… If you listen to me, you’d know what to do.” So that whole thing, if you pull that apart, you can see how unhelpful it is.

Kat Lee: It is, and I think it’s important to know that those things then can send a parent into a crisis mode again, because they start doubting themselves. “Maybe I do need to be doing all these. Maybe there’s a lot of things,” and, as we know, as you and Dr. Gutstein have talked about so many times over the years, that’s when you as a parent can, if you go into crisis, start just trying everything; trying everything again. “I’m not doing enough. I’m not doing enough.” And then there you go. You’re spiraling into that space. Again, I think that’s such important work that you both have done for parents to help them. And I thank you, and one thing I’d like to make sure we do for parents today is tell them what to do. How can you help yourself move out of crisis? What are a few steps we can think about taking to do that? 

Dr. Rachelle Sheely: One of the ways… If you find yourself being an autism parent, for lack of a better… I think about autism all the time. I read books about autism all the time. I talk to… I talk to people online all the time about autism, these are the sites I go to. I think you can take a… Kinda take a deep breath and ask yourself, “Who am I? Who am I? What fulfills me? What is my role as a parent? How do I stay in the guiding relationship with all of my children? How do I make sure that all of my children feel guided by me? What’s my relationship with my husband or my partner? How do I… How do I keep that balance?” And if you find yourself getting out of balance, if you’re feeling driven, you are probably going down a path that you’ve gone down before and forgotten about. And I’m… I’m a big proponent of taking care of yourself.

Kat Lee: I do find that sometimes, parents don’t want to think of themselves as in crisis. It’s almost like a self-judgment, like “I shouldn’t be in crisis. I’ve been on this journey with my child. I love my child and my family. I just shouldn’t be in crisis, therefore I’m not.” What would you say to that parent? 

Dr. Rachelle Sheely: Yeah, I would say [chuckle] we are who we are, and things get triggered. And the sooner we can recognize that that’s being triggered, and we can go back to just being a great guide, a great wife, a great husband, a great parent. A great me for me. [chuckle] I think the sooner that we can do that, we can stop getting overly focused on something that’s not going to be that helpful. But I say that without judgment, because I could be talking to any parent right now, and I would be saying the same thing. This is not specific to autism, or it’s not specific to ADHD or anything else. It’s, as parents, what we go through, because the world we live in sends us messages all the time about what we should do to be a better parent, and we have to really keep our own footing on what we believe, what we know, and what we want the future of our children to be.

Kat Lee: And thanks for joining us for Autism: A New Perspective, the podcast show where we help you understand what is going on in the mind of your child. And we encourage you that growth for your child is possible. I’m Kat Lee. See you next time.

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